People with Disabilities Spend Years on Waiting Lists for Housing

architecture downtown Reykjavík houses

Individuals with disabilities are often stuck on waiting lists for housing from municipalities for years on end, with little or no information about their status, RÚV reports. Þroskahjáp (Iceland’s National Association of People with Intellectual Disabilities) says that this uncertainty weighs heavily, not least because of the high cost of rent.

A call for increased transparency

This week, spokespersons for Þroskahjáp (Iceland’s National Association of People with Intellectual Disabilities) told RÚV that it was necessary for local authorities to increase transparency when allocating housing to people with disabilities. According to Þroskahjálp, there have been instances in which people with intellectual disabilities have been kept waiting for up to a decade for suitable housing. During this time, they receive limited information about the status of their applications.

As noted by RÚV, the Minister of Social Affairs signed regulations on improving services for people with disabilities nearly five years ago. One of the things that the new regulation was supposed to ensure was that the waiting lists for housing would be shortened and that people with disabilities who require long-term support would be afforded the opportunity to decide where they live.

The situation on waiting lists, however, seems to have improved little in recent years. Anna Margrét Hrólfsdóttir, Þroskahjáp’s Public Relations Officer, told RÚV that still to this day it was not uncommon for their clients to spend years on waiting lists.

Uncertain of their place on waiting lists

“Oftentimes, the feeling is that these allocations are almost arbitrary. Living with this uncertainty can be incredibly challenging,” Anna stated. “These people don’t know where they are on the waiting list, nor what the rules are for housing allocation.”

According to Anna, it’s usually the family members who meet the obligations of the municipalities. People with disabilities, like everyone else, find it difficult to have to live with their parents well into adulthood. Their possibilities in the general rental market have long been limited but especially now that rental prices have skyrocketed all over the country: “Which makes it even more urgent for the local authorities to live up to their obligations.”

Alarming rhetoric

Anna also observed that Þroskahjálp is pinning its hopes on efforts in the development of housing by local authorities and the positive steps have been taken in the last few decades. On the other hand, there has been some alarming rhetoric from local government officials recently, regarding how costly it is to secure housing for people with disabilities: “Naturally, it’s troubling to see something that we consider as a human right being referred to as a ‘burden and a cost.’”

Funding for Municipal Services for People with Disabilities to Increase by ISK 5 Billion

Alþingi Icelandic parliament

Local municipalities will now receive a permanent increase in funding for legally required services for people with disabilities. RÚV reports that this increase will amount to ISK 5 billion [$35.028 million; €33.043 million] a year.

Per an announcement on the government’s website, the agreement was c0signed by the chair and executive director of the Association of Local Authorities and the Ministers of Finance and Economic Affairs, Infrastructure, and Social Affairs and the Labour Market on Saturday. It is aimed at helping local municipalities “achieve established performance and debt targets according to the current financial plan for the years 2023 – 2027.”

Under the terms of the agreement, local taxes will increase by .22% against a corresponding reduction of state income tax. The tax burden on individuals will not change, however. Rather, the agreement deals with the specific transfer of funds from the state to local municipalities.

Local municipalities have long called for increased funds to provide services for people with disabilities and are still calling for higher contributions. Per Saturday’s agreement, both local authorities and the three undersigning ministries agree to conduct expense analyses for services provided with the aim of renegotiating the agreement next year.

Couple Who Are Blind Twice Denied Entry Onto Flight, Told to Pay for Escort

An Icelandic husband and wife who are blind were twice prevented from boarding an SAS flight to Iceland after being told that they needed to pay for an escort to accompany them onboard. RÚV reports that the couple, who were traveling with their one-year-old daughter at the time, will be pursuing legal action against the airline.

Eyþór Kamban Þrastarson and Emilía Pykarinou had a flight booked from Athens, Greece to Copenhagen, Denmark, and then on to Iceland. However, when they tried to board the Scandinavian Airlines flight, they were denied entry. “The airline insisted that we be accompanied by another person,” explained Eyþór, who said that the couple was also supposed to pay for a third seat for this purpose. They tried to board another flight two days later but were prevented from boarding for the same reason. Eyþór believes that the fact that he and his wife were traveling with their young daughter played a part in the airline’s reluctance to allow them to board, but insisted that they’d have never booked the flight if they didn’t feel comfortable looking after their child while flying.

In the end, the Eyþór and Emilía were only able to board because, a week after they were supposed to have traveled home, they found an Icelandic woman who already had a ticket for the same flight and who agreed to act as their escort.

The couple intends to pursue legal action with both Blindrafélagið, the Icelandic Association of the Visually Impaired, and the Icelandic consul in Greece, supporting their case. “This is by no means over,” said Eyþór, pointing out that the airline’s policy allows for children as young as five to travel unescorted. “We are in no way okay with the fact that we were ordered to find someone to fly with us, let alone pay for it.”

Evidence to Support Allegations of Pervasive Abuse in Long-Term Mental Health Wards

There is strong evidence to support long-standing allegations of pervasive violence, drug coercion, and abusive conditions endured by patients with developmental disabilities and mental health issues in long-term care facilities, RÚV reports. This according to a report compiled by a working group that the Prime Minister appointed two years ago, following RÚV’s reportage on inhumane treatment in the Arnarholt long-term care facility, as well as additional testimony compiled by the mental health advocacy group Geðhjálp and current and former staff of Landspítali’s secure and forensic mental health wards.

Employees of secure and forensic mental health wards came forward in 2020

In November 2020, staff at the Arnarholt long-term care facility came forward with detailed descriptions of inhumane treatment of patients at the facility, dating back to the 1970s. Following these reports, Geðhjálp, an organization which advocates on behalf of people with mental health issues, received an increase in complaints about the services and facilities provided by Landspítali in its secure and forensic mental health wards, both of which are located in the Kleppur psychiatric hospital. Many of these complaints were made by current or former employees. (Secure wards are intended to serve patients with severe mental health issues who need long-term care and have found success with other treatment resources. Forensic mental health wards are specialized psychiatric wards which aim to rehabilitate patients with serious mental health issues who have committed crimes and help them reintegrate into society.)

Among the complaints were reports of patients being forced to take medication against their will, denied information about their treatment, restrained with shackles, kept in the wards for months at a time if they refused treatment options, or locked in a room for days if they broke the rules of the ward. Forced injections were said to be a regular occurrence on these wards, often causing injuries to both patient and staff in the process—injuries that often went unreported.

As a result of these complaints, Geðhjálp worked with at least eight former and current employees of these wards to compile a report on conditions and patient treatment. The report and staff testimonies were then forwarded to the Directorate of Health, which said it made site visits in response to the allegations. Landspítali said it interviewed a number of employees. But both institutions refused to comment further on their investigations or conditions at the facilities when contacted by RÚV in May 2021.

More granular investigation necessary

Fast-forwarding to the present, the working group’s report, which was submitted to Alþingi on Wednesday, says that a more granular investigation is necessary. Moving forward, it suggests that there be two separate inquiries: one which focuses on the years 1970 to 2011, when treatment of the patients in question was transferred to local municipalities, and one which focuses on 2011 to the present day.

The study focusing on the years 1970 – 2011 should answer three primary questions, says the report. Firstly, what was the experience of adults with developmental disabilities and mental health issues in long-term care facilities during the stated period? Secondly, what abusive or adverse treatment did this group undergo? And thirdly, how did the parties responsible handle supervision and monitoring of these facilities during the time frame in question? The questions of the second study, focusing on 2011 to present day, would largely be the same, with a focus on systemic factors that increase the likeliness of adverse treatment and conditions within long-term care facilities.

The report also notes that while transferring the care of patients with severe mental health issues and adults with disabilities to local municipalities was intended to ensure better monitoring of patient treatment and ward conditions, this has not been the reality in many cases. It also makes particular note of the fact that it was very difficult for the working group to get information from local municipalities and that the answers they did receive were often imprecise.

Nearly half of municipalities, Directorate of Health did not reply to requests for information

In fact, nearly half of the municipalities in Iceland, or 31 of 69, didn’t bother to respond to the working group’s request for information, despite repeated reminders. Very little information was available from West Iceland; there Snæfellsbær, Grundarfjarðarbær, Helgafellssveit, Eyja- og Miklaholtshreppur, Stykkishólmsbær, Borgarbyggð, and Hvalfjarðarsveit all failed to reply. Two municipalities in the Westfjords, Bolungarvíkurkaupstaður and Súðavíkurhreppur, didn’t reply. Nine municipalities in Northeast Iceland—Hörgársveit, Svalbarðsstrandarhreppur, Grýtubakkahreppur, Þingeyjarsveit, Skútustaðahreppur, Tjörneshreppur, Svalbarðshreppur, Langanesbyggð, and Aykureyrarbær, the fifth-largest municipality in Iceland, named for the town of Akureyri—did not answer. Even worse was Northwest Iceland and Suðurnes (the Reykjanes peninsula), where no municipalities replied. The fourth-most populous municipality in Iceland, Reykjanesbær, is located on Suðurnes.

Seltjarnarnesbær and Kjósahreppur did not reply, but all other municipalities in the capital region did. All municipalities in East and South Iceland replied.

The Directorate of Health did not reply.

Upon receipt of the report, Prime Minister Katrín Jakobsdóttir said it was clear that there are serious and widespread problems in the system, but that it is not yet possible to talk about the report findings in detail. She also expressed surprise at how difficult it was for the working group to information-gather. Looking ahead, Katrín said the report would be reviewed and discussed by parliament, which would then determine the best course of action.

Wants society to learn from history

Following the working group’s delivery of the report to Alþingi, 61-year-old Ólafur Hafsteinn Einarsson spoke to RÚV about his own experience in long-term care facilities. Ólafur lived in facilities for people with mental health issues and developmental disabilities throughout his life, and said that as a child, he was beaten and subjected to verbal abuse at Sólheimar. As an adult, he lived in several different facilities from 1975 – 1990, including Arnarholt and Bitra, which was not even a proper residential facility, but actually a women’s prison. He said Bitra was the worst of the places he lived. In 1990, Ólafur moved to a group home in Kópavogur, where he lived for 22 years before moving into his own apartment in 2011, around the age of 50, which he said felt like his greatest personal triumph.

The results of the report were not entirely surprising to Ólafur, although he said that overall, it was “somewhat rougher than I thought it would be.” He continued by saying he wanted to know why living at these facilities had to be so difficult for the residents. He also said  he was glad that investigations into the conditions in these facilities would go as far back as 1970.

“So people, in society in general, can see and hear it, so that they can learn from these things.”

Patients should have a seat at the table

The working group concluded its report by stating the belief that further investigations into ward conditions and patient treatment should be inclusive of the people these inquiries are intended to benefit. As such, they advocate for people with disabilities and mental health issues to be part of future inquiries and for these individuals to be provided with the necessary assistance to present their cases and experiences to the investigating committees.

Reykjavík Ramps Up

In March of this year, a project called Ramp Up Reykjavík launched with the intention of helping local businesses install wheelchair ramps to improve accessibility for people with disabilities. Per an press release on the City of Reykjavík website, the organization not only met its initial goal of installing 100 ramps around the capital four months ahead of schedule, it also has a surplus of funds—ISK 15 million [$115,517; €99,876], to be exact—which will be placed in an Access Fund to assist in funding additional ramp access.

Ramp Up Reykjavík is a collaborative venture undertaken by local businesses, labour unions, government ministries, associations, banks, and city officials. It was launched by entrepreneur Haraldur Ingi Þorleifsson after finding himself stuck outside downtown shops and restaurants on numerous occasions. He recalls a recent summer night during which he had to sit outside a shop while his family all went inside because there was only one step at the entrance and it was too tall for his wheelchair to go over.

“That wasn’t the first step,” he writes. “I’ve sat outside before and often. I’ve not gone to coffeehouses because of that step. I’ve not met friends out. I’ve not gone downtown on Þorláksmessa with my family. All because of that step.”

Haraldur isn’t the only person in his position, he continues, noting that thousands of Icelanders use wheelchairs, and thousands of tourists, too. This is what inspired him to start Ramp Up Reykjavík, soliciting donations to fund 100 ramps to start with. Under the terms of the funding, restaurant owners can be reimbursed for up to 80% of the cost of installing a wheelchair ramp on their premises.

“It’s amazing how easy it actually was,” Haraldur says. “All the founding members, planning authorities, restaurants, and shops in the area really pushed the boat out to get the ramps set up and we had a lot of support from the start.”

Mayor Dagur B. Eggertsson praised the project and said the city was prepared to continue funding for it. Ramp Up Reykjavík will continue to improve access around the capital but is also set to move further afield. Akureyri mayor Ásthildur Sturludóttir said she’d support the project in her town and both Prime Minister Katrín Jakobsdóttir and Minister for Social Affairs and children Ásmundur Einar Daðason said that they’d support the initiative in the countryside, having seen how successful it’s already been in the capital.